Riley's Reinforcements: Walking to cure Cystic Fibrosis
Riley’s Reinforcements
Riley’s Reinforcements
Reinforcements: extra personal sent to strengthen an army. We are so incredibly grateful for our reinforcements not only for our family but especially Riley.
Riley was diagnosed with Cystic Fibrosis at 6 weeks old. He has 2 of the more rare mutations of CF. His newborn screening results came back as inconclusive, they retested at 2 weeks and those results came back positive for 1 of his mutations. A few weeks later he took a sweat test and it was confirmed he had Cystic Fibrosis. Through more bloodwork we were able to find out his other mutation. CF is a complex genetic disease and effects each person so differently. Riley's CF currently effects his GI tract more than anything else. We are so grateful to hear how great his lungs sound at each appointment but we know how quickly and easily that could change. Riley's care is currently on the preventative and maintenance side of things, with his type of CF he is not eligible for the drugs they currently have available for some CF patients.
Riley is currently thriving. He is a wild and crazy 2 year old. He loves dinosaurs, his big brother Reed, playing at the beach and loving on his family. He is stubborn, curious, smart, independent, and so funny. Riley loves to take charge of his meds and therapy. He takes his medications like a champ daily, swallows his digestive enzymes whole (better than most adults I know, his parents included) and loves to start his vest therapy on his own. We are constantly in complete awe of how strong and independent he is.
We go to visit our CF care team every 3 months. Our team consists of a pulmonologist, gastroenterologist, respiratory therapist, nutritionist, CF nurse and a few others. We are so incredibly grateful to have such an amazing team to help Riley thrive.
The Cystic Fibrosis Foundation has been such an amazing resource to us since day one of receiving Riley's diagnosis. They have helped answer many questions, given us resources to help navigate things from hospital stays to insurance plans. This year will be our 3rd CFF Great Strides walk and we are so excited. It is always such an amazing experience to be surrounded by families in the same boat and all of the amazing support from friends and family.
CF care would not be where it is now without the amazing work the CF foundation does. While Riley can't benefit from some of the amazing drugs and things they have out currently, I have such hope and faith that they will find a cure in his lifetime.
We are so grateful for your generous donations as well as thoughts and prayers. - The Goggans Family
Riley was diagnosed with Cystic Fibrosis at 6 weeks old. He has 2 of the more rare mutations of CF. His newborn screening results came back as inconclusive, they retested at 2 weeks and those results came back positive for 1 of his mutations. A few weeks later he took a sweat test and it was confirmed he had Cystic Fibrosis. Through more bloodwork we were able to find out his other mutation. CF is a complex genetic disease and effects each person so differently. Riley's CF currently effects his GI tract more than anything else. We are so grateful to hear how great his lungs sound at each appointment but we know how quickly and easily that could change. Riley's care is currently on the preventative and maintenance side of things, with his type of CF he is not eligible for the drugs they currently have available for some CF patients.
Riley is currently thriving. He is a wild and crazy 2 year old. He loves dinosaurs, his big brother Reed, playing at the beach and loving on his family. He is stubborn, curious, smart, independent, and so funny. Riley loves to take charge of his meds and therapy. He takes his medications like a champ daily, swallows his digestive enzymes whole (better than most adults I know, his parents included) and loves to start his vest therapy on his own. We are constantly in complete awe of how strong and independent he is.
We go to visit our CF care team every 3 months. Our team consists of a pulmonologist, gastroenterologist, respiratory therapist, nutritionist, CF nurse and a few others. We are so incredibly grateful to have such an amazing team to help Riley thrive.
The Cystic Fibrosis Foundation has been such an amazing resource to us since day one of receiving Riley's diagnosis. They have helped answer many questions, given us resources to help navigate things from hospital stays to insurance plans. This year will be our 3rd CFF Great Strides walk and we are so excited. It is always such an amazing experience to be surrounded by families in the same boat and all of the amazing support from friends and family.
CF care would not be where it is now without the amazing work the CF foundation does. While Riley can't benefit from some of the amazing drugs and things they have out currently, I have such hope and faith that they will find a cure in his lifetime.
We are so grateful for your generous donations as well as thoughts and prayers. - The Goggans Family
Comments